This Is What A Great Dog Looks Like

For 3 reasons:

1. It's mindless fun for a Friday night (and a Friday night during a heat wave, at that).
2. Maya's laugh is sure to make you smile.
3. Parker is the best dog ever.


 

I Am Not A Mind Reader (And Neither Are You)

In discussing AAC (augmentative and alternative communication, in which a child uses something other than speech to aid their communication---signs, boards, picture cards, apps, devices) with parents, I am sometimes surprised by their lack of interest in using it at home with their children who have complex communication needs.  Obviously all parents want to communicate with their children, so their resistance often comes from a well-intentioned place . . . they feel like they understand their kids, and so inserting a device (which can feel cumbersome and disconnecting) isn’t necessary.  It might feel more personal to engage with a child directly, through their speech and gestures, and parents feel like they don’t need a device because they understand what their child is thinking.

It’s a (philosophically) dangerous assumption.  One that all parents make at some point, and all parents should abandon at some point.

Picture this:

 

(this picture is from the internet somewhere)

Maya, my 5 year old daughter who has severe speaking challenges, and I are playing outside after school. A yellow school bus drives by and she jumps up, points at the bus, looks from the bus to me and yells “Bus!” (She’s a big bus lover, and “bus” is a very clear word for her.) She has wide, excited eyes and a smile. I know she’s thinking Wow, I love that bus! and so I reply “Yes, a bus! I know you’re excited to see the bus!”

Except here’s the problem---I don’t actually know what she’s thinking. I get the gist (something enthusiastic about a bus) and I assume the details (I love that bus).  This is a big problem, a common trap that parents (and other adults) fall into with communicationally complicated children.  The I-know-what-she’s-thinking mindset solidifies slowly, out of necessity, and initially develops for all parents with their babies/toddlers.  When children start to communicate, they do it through whining, crying, pointing, crawling/walking to objects (often times dragging a parent behind them), making sounds, signing, etc. We caregivers become adept at interpreting this intent-filled mash-up. Eventually, speech comes and the child can more clearly express their thoughts . . . except when speech doesn’t come . . . and then parents get additional practice at translating sounds and approximations, or gestures, or even sometimes just a child’s eyegaze---a glance that lingers on a cabinet, then flicks to their parent’s eyes, then returns to the cabinet.

We predict what our children are “saying”, and, with the youngest of children, we probably get it right pretty often. (After all, if a toddler points to the cookie cabinet and says “ti-ti” they probably want to eat a cookie, not to discuss cookie theory or bake a batch of cookies or conduct a brand comparison or analyze cookie shapes. Probably.)

But as a child with limited speech gets older, a somewhat loaded situation develops when we continue to make assumptions about their speech.  If we assume that in a particular situation (eg. Maya sees a bus driving by) a certain sound/word/sign/gesture (“Bus!” said with excitement) always means more or less the same thing (I like the bus! I love buses!) then we begin to pigeonhole our child’s communication, and to (inadvertently, unintentionally) sell them short.  If my reply to Maya in the bus situation is always something along the lines of “You love buses!” or “I saw that bus!” then I am a) making a simplistic assumption about what she was thinking, and b) replying in a predictable, kind of boring way that doesn’t expose her to any new ideas.  Both of these points---the assumption about her thoughts and the reply that I chose---have unfortunate consequences.

First, the assumption of her thoughts stinks, because I am assuming that she is thinking more or less the simplest thing that I can glean from her communication (one word (bus) +  excitement = I like that bus).  Whether this is accurate or not, I am selling her short by not stretching my mind to allow for the fact that she could be trying to say other (more interesting, novel, creative) things about the bus.

Second, my reply stinks, because my low expectations of what she was trying to say have now lowered the quality of my response. What if she was trying to say “That bus is so yellow!” and I replied “Yes, you like buses.” Ugh. My intentions are nothing but good, but my underestimation of what she is attempting to say has now led to a low level, simple reply. Even if she was saying “I love buses!”, I could offer validation with “Wow, a bus! You love buses! That bus was bright yellow like the sun, and it had so many wheels! I wonder if we’ll see another bus today.” A response along those lines acknowledges her enthusiasm and then models other ways that we can communicate about buses, other things that we can think about when we see a bus.

The simple truth is that “Bus!” could mean a lot of things from a 5 year old. A lot of things. To name a few:

-that bus is yellow                        -that bus is big                             -that bus looks like my bus 

-that bus is not my school bus      -is that my school bus?                  -I like that bus

-I see a bus                                 -do you see that bus                      -I liked riding the bus to school today

-something happened to me when I was on the bus today         -I have a toy bus just like that one, 

-I want to play with my toy bus                                                       -I want to get on that bus               

-look at the wheels (or insert other part) on that bus 

-that looks like the bus from (insert book/movie/tv show)             . . . etc.

The only way to know what Maya wants to say about the bus is to provide her with a way (or multiple ways*) to say as many things as possible. This is why I can’t help but cringe when parents (or others) say “We don’t really need to use AAC (communication boards, PECs, devices, apps, whatever) at home because I know what he’s thinking” (or “I know what he’s trying to say”). Maybe you do, or maybe you get the main idea, or maybe you get it wrong but your kid doesn’t try to correct you (children with limited communication abilities typically become passive communicators). Or maybe your answer is distracting and “good enough” even if it isn’t correct (eg: If your child comes home from school, points to the cabinet, and says “cookie”---thinking about how the girl who sits next to him at school today had the exact cookies that are in that cabinet---and you assume he wants a cookie and give him some on a plate, what’s the obvious reply from your kid? To sit and eat the cookies. You then are positive that he was requesting a cookie and you fulfilled his request, and he is now eating cookies and has moved on from what he was thinking about before.).

Guessing/assuming/inferring what a child is trying to say is not a good long term solution. A vehicle needs to be provided that will allow them to say diverse, novel things in multiple environments. We (the adults) need to learn to ask “What about the __________?” and then wait.  And wait. And wait.  And then, if nothing comes, model different statements that would all be appropriate.  Here’s an example:

Maya: Bus!

Me: What about the bus?

Maya: (silence, watching the bus drive down the street)

Maya: (silence)

Maya: (silence, looking at me)

Me: What do you want to say about the bus?

(more waiting)

Me (speaking and tapping emphasized words on her talker): We could say that the bus was yellow and big, that it was going fast, that you like that bus!

This shows her that there are many things to say about buses, and that using the word “bus” isn’t enough to let me know what she’s thinking. She needs to say more, and I expect that she can do it (even if she can’t do it yet). It shows her other words that would be useful in another situation like this. And it lets me insert my guess of what she was thinking (“I like that bus”) but doesn’t limit her to just that one sentence. It opens both of our minds, a little bit.

 *We have tried many methods of communicating with Maya before settling in with her communication app, Speak for Yourself. Many of those methods are outlined here. This is definitely not a comprehensive list of AAC options, it's just the stuff that we've tried.

It Takes More Than A Village

It might take a village to raise a child, but to raise a child with special needs, it takes a team. A specialized team. One team member to address feeding and speech, one to manage gross motor development, one for smaller fine motor movements, and one for special instruction. One such team became a part of our lives back in 2009.

I don’t remember exactly how old Maya was when she started receiving therapies through Early Intervention, but I would guess it was right around 10-11 months old. She was little and adorable and we knew that she had some delays, but really had no idea how significant her challenges were or for how long she would need therapy.  I had mixed feelings about the therapies, some of which I’ve already shared. We had a very full schedule and it was difficult not to have some resentment over being tied to so many appointments per week, especially when I saw other women with babies in the neighborhood meeting for coffee, having playdates in the park, or meeting up at the playground. I would have fleeting interactions with them as I whisked tired Maya out for 30 minutes between commitments, determined to get some “normal” time into her life.

While the therapies were sometimes a source of frustration for me, the therapists (by and large) were not. Earlier this week I randomly ran into one of them in the city, and as I hugged her I couldn’t help but think that bystanders who witnessed the vigor of my attack/embrace must think that she was a long lost best friend . . . not my child’s former speech therapist.

It got me thinking about Maya’s team of EI therapists. We lost a few (that’s a nice way of saying we gave a few the boot) before finally settling with the team that would carry us through until preschool, the team who would teach Maya and help her to grow stronger and smarter, the team who became my friends and sounding boards.  Each one of these women brought something to the table, and each played a formative role in the way that I interacted with my child.

Our EI therapists didn’t just teach me about exercises and development and milestones . . . they taught me how to be Maya’s mom, how to be the confident, capable mom of a complicated child.  Certainly, I would have been her mom (and a good one at that) with or without them---but they gave me practical guidance, tangible ways to aid in her progress, and (of equal importance) the camaraderie and support that I so needed as I found my footing over those early years.

The therapists had the perspective and knowledge that no one else did---certainly not me, or our family, or friends with typical kids, or even our pediatrician. When I asked “have you worked with other kids who xyz?” I would get a straight, honest answer---and if the answer was yes, we knew what to try . . . and when it was no, I got my first glimpses into just how outside-the-box Maya would turn out to be.  They could draw from their experiences with other kids who followed similar paths to a certain skill, they knew which toys or household items offered the most bang for the buck, and they could see when we were working hard, even if progress wasn’t coming as fast as we had hoped.

Together, the therapists and I learned when it was appropriate to push Maya, and when to back off.  We worked as a team, each provided the other with new bits of information about what she was able to do, or secret motivation tips. Every time that they confirmed my suspicions (It seems like she might drool more than other kids her age---have you noticed that? I’m not sure if that should be slowing down now.) or agreed with my assessment of progress (Did you see her reach across midline? Was she able to do that last week?) I became more confident in my ability to collect data, the sharpness of my observations, and the accuracy with which I would be able to discuss my daughter with the countless doctors that we were frequently visiting.  I can only see it now, in hindsight, but I needed the validation that they provided when they saw me working with and interacting with Maya—their approval helped me rest ever so slightly easier, knowing that we were doing the absolute best that we could.

Well, most of the time.

Other times we weren't doing the best that we could. I was frustrated or Maya was having a week of temper tantrums. I was at the end of my rope with appointments and reports and bad news and lack of progress, and the therapists became my sounding board. They were the only adults that I was interacting with, they were in my home, and they knew everything about Maya---it made sense that they were often my news-guinea-pigs . . . the first people that I would tell about a genetic test we were running, or an evaluation that had yielded surprising results.  Their thoughtful (as in full-of-thought, not as in kind) reactions, follow-up questions, and words of wisdom helped me to process things more deeply and figure out exactly how I would relay the information to our family and friends (and readers).

The therapists balanced out the well-meaning-but-not-very-informed input from those not privy to the reality of raising a child with special needs. Those who weren’t in my living room, on our gym mats, watching me stretch and position and move Maya’s limbs, who would say “Well, my doctor said that they’ll basically learn everything themselves with enough tummy time . . . maybe if she spent more time on her belly it would help?”  Those who weren’t in my kitchen, as I sat across from Maya with chewy tubes and used one hand to steady her head and open the side of her mouth while she cried and I tried not to clench up, who said “My friend’s daughter did the same thing---she was a really picky eater but they just kept offering the same foods and eventually she realized that she had to eat what they gave her.” 

Collectively, the therapists saw my eyes fill with tears more than anyone, ever. (I am generally not a crier.) And they did a great job continuing with rational conversation and pretending that it wasn’t happening, which was the exact thing that I was hoping that they would do.

The therapists loved Maya, despite the fact that they weren’t obligated to do so, and that expression of love gave me the hope and belief that others would see how amazing she is and love her, too.  They treated her with tenderness, but also didn’t let her use her extra challenges as an excuse (No, you are not too tired to clean up, get your little head off of that table, sit up, and help put these markers away.).  They appreciated her sass and jokes, but forced her to get down to business and do her work.  They treated her like family, and (I believe) they looked forward to the time that they spent with her.  The honesty of their feelings for Maya—the fact that they knew all of her challenges and struggles, all of her stubbornness and sass, the great stuff and the not-so-glamorous stuff--- and they welcomed her with open arms and loved her without conditions---it touched one of my first, deepest, unspoken fears about having a child with special needs: what if people don’t love her the way that they would have if she was “typical”? What if she doesn’t have friends?  The EI therapists were her first friends.

For the therapists reading this, the ones who go above and beyond, the ones who love their little patients and listen to their (sometimes fragile) parents, the ones who go home at night and think about the families that they work with . . . thank you.  I’m thanking you on behalf of the parents who are tired, or angry, or stretched too thin, or emotional, or shy, or introverted . . .the parents who aren’t remembering (or aren’t able) to thank you themselves (I have been all of those parents, by the way).  We know that it’s not in your job description to love our kids, or to be our friends, but you are in a unique position---kicked into the inner circle of a family in crisis---and the ways that you offer support are making a critical difference in our lives . . . even if we can only see it in retrospect.  Keep up the good work. You are changing lives. Thank you.

Especially for KN, NB, VC and CT. Thank you.

What To Say To The Parent Of A Child With Special Needs

In my time blogging about raising a child with special needs, I’ve received a good number of emails. There are several recurring themes to these emails: some about assistive technology, some about looking for specific resources or online communities, and several from friends and family members whose loved ones have recently had a child diagnosed with special needs. In this last group of emails, people often express their love and concern for the parents of the newly diagnosed child and ask me “What should I say to them?”

Another writer answers that question this week in her article “5 Things That You Can Say To The Parent Of A Child With Special Needs.” Disconcerting, though, is the fact that although I am indeed “the parent of a child with special needs” I would not be jazzed about receiving some of these suggested comments. Let me explain why, and then I’ll offer my own thoughts on what to say.

First, don’t tell me “I’m sorry.” Like, ever.  “I’m sorry” leaves a disturbing amount to interpretation. Are you sorry that my kid is lying on the ground and throwing a fit? Ok, but maybe “we’ve all been there” would be more clear. Are you sorry that I’ve spent so much time in therapy this week, or that we had 2 doctor’s appointments yesterday, or that I’m stretched so thin that we can’t get together? Maybe “I’m sorry that things are so hectic for you right now” would fit.  Are you sorry that my kid has special needs? Well, you can keep that to yourself.  To me, “I’m sorry” comes across as “I’m sorry that your kid is the way that she is.” or “I’m sorry that you are burdened by your child.”  As I hear it, it’s an insult to my child (and a pretty bad one at that). I don’t want your sympathy, and Maya is not a circumstance to feel bad for, she is a lovely little girl. 

Second, please don’t ask for her diagnosis. It’s not appropriate to ask about other people’s medical information. Asking for a diagnosis is not making small talk, or breaking the ice----it’s asking about her private medical business. If you want to make conversation that acknowledges her challenges or “break the ice” you could ask about something specific, I guess, like “Is it hard for her to climb those stairs?” or “How long has she been using her communication device?”  If I want to share information about her diagnosis, I will----if not, asking makes things a little awkward. (PS-If you’re new here, Maya doesn’t have a diagnosis, which is particularly fun to explain to bold strangers. One time, in response to hearing that Maya didn’t have a diagnosis (after she asked), a woman asked me if I had ever taken her to a doctor. A woman I had never met asked me this. While I was eating in a diner. With my family. Seriously.)

Now, possibly disregard everything that I just said . . . because while all of the above rings true for me, it might not for others.

Undoubtedly, there are some SN parents who would appreciate “I’m sorry” and would enjoy being asked about a diagnosis. (If you’re in doubt, see the little conversation on our Facebook page last night.) I would hate those comments, but some would love those comments, while some just want to be left alone (ok, that’s often me as well, given my anti-social tendencies. I’m working on it.) and others are so happy to be out talking to other adults that they don’t care what the conversation is even about. So . . . I guess we’re all different? Who would have thought!

The bottom line is that there are no universal things to say . . . parents of kids with SN are as diverse as any other group of adults (parents of kids with brown hair, parents of kids who wear shoes, etc). Our commonality (and, to be fair, it’s not one to be underestimated) is that we have a lot on our plates . . . we are short on time and long on stress, we struggle with more than our fair share of emotional turmoil, we are usually fighting several battles at once, and we are worried for our children and their futures. But everyone responds to these stressors, and to fear of the unknown, very differently. Some people want reassurance (this will all be ok), some want sympathy (this is terrible, isn’t it?). Some people want to talk about the issues (tell me about the diagnosis), and some want to ignore them (isn’t the weather lovely today?).  

For those of you who have come here through a search engine because you’re actually trying to find the right thing to say, I offer this: just love the kids. Nothing meant more to me (and continues to mean more) than friends, family, and coworkers doting on my kid. All parents enjoy seeing others care about their kids, but for me (and, I imagine, for many other SN parents) the ideas of acceptance, inclusion, respect, and love are especially loaded.

For those of you who are just wondering what to say to the random SN parent that you might bump into at the playground, I would go with something simple. You know, like “Hi”. 

The Gatekeepers

Children with complex communication needs (CCN) need various devices, tools, and supports in order to communicate effectively and to access the curriculum in their schools. This is a simple, solid, well-researched principle and it is the legal right of a child with CCN to have a device and the support services necessary to implement the device (staff training, family training, etc.).

Between the children and the devices stand The Gatekeepers . . . the professionals (generally SLPs) employed by the DOE who have the responsibility of evaluating children (of various ages), assessing their strengths and weaknesses (despite having just met them) and formally recommending an exact communication device/app that will serve them for at least the next year (after only working with them for an hour or two).  It’s a big job. A huge job. The correct recommendation can allow a child to suddenly answer questions in class, make small talk with her teacher, ask questions, and make connections. A faulty recommendation could be too complicated, left to become an expensive paperweight as it is abandoned by the staff or the user . . . or it could be too simple, quickly rejected by a child who tires of saying “Today is Tuesday.” “Today is cloudy.” “I want juice.”

These gatekeepers . . . I don’t trust them. And you out there---parents, classroom teachers, therapists---you shouldn’t (blindly) trust them either.

This mistrust---it is not paranoia. It is based on countless emails (from around the world), an unfortunate number of personal conversations, and two startling encounters that I have personally had with the gatekeeper who would be in charge of Maya’s AAC (I said “would be” because this person would actually have the power to determine what Maya is allowed to use, if I hadn’t decided to reject her recommendation and go rogue). Seriously, the most recent exchange---in which she deemed Maya’s AAC device inappropriate and attempted to replace it with something else---will blow your mind. But I’ll get to that in a minute.

I want to be clear on this: I do not believe that the gatekeepers are intentionally trying to foil children with CCN, to withhold resources from them, to impede their ability to communicate and to make progress. I believe that they want to help, and I believe that they think they are helping. But the people who rise to the position of gatekeeper have typically been working “in the system” for a while, and they are frequently set in their ways. They often have a handful of go-to items that they recommend (you get a TechSpeak, and you get a TechSpeak, and you get . . .um . . . a TechSpeak). They can be overconfident---sometimes brazenly so---and are often unreceptive to concerns/push back from parents (and sometimes even from school staff) who they view as either uninformed or misinformed about AAC. Since the iPad boom, many gatekeepers are now borderline paranoid that families “just want an iPad” (that was basically the opening line of our assessment last year---“we’re not going to just give you an iPad”---despite the fact that I hadn’t requested, or even mentioned an iPad.)

A professional who is overconfident, who tenaciously adheres to her recommendations without accepting  input from others, who assumes that others are misinformed, who becomes defensive when families express a difference of opinion, and who enters a new situation with the predisposed assumption that she’s going to offer one of three standby items . . . well, that’s not a great professional. Now if that same professional is in charge of speaking for children who have no voices of their own . . . well, that’s downright dangerous.

My daughter, Maya, is a 5 year old with complex communication needs. She had a (terrible) assistive technology evaluation from the DOE last year, in which I fought for a dynamic device that she would be able to grow into, and the SLP in charge insisted that a static 32-button device was all that she needed, and all that she would be capable of using for the upcoming year. (The above paragraph is a fairly accurate description of L, our evaluator from the DOE.) I have since learned that preschoolers are notoriously underserved with regards to AAC. Assumptions about starting slowly, not overwhelming the learner, proving competency on low tech/no tech systems before progressing to dynamic displays are so ingrained that many old-school evaluators don’t even think of these things as biases, they think of them as facts. (sigh)  After this disheartening evaluation I realized that the only people who would presume competency and have audaciously high expectations of Maya were my husband and I.  I logged a ridiculous number of hours researching AAC and got Maya set up on a communication app that has proved to be wildly successful for her.  The video below, presented at an AT conference on April 27^th, shows how she became an independent communicator (and it’s pretty inspirational, too). After our presentation we were approached by several DOE employees who commended us as a shining example of how AAC can be successful with early learners.

If you don't want to watch the whole thing, you should just fast forward to something in the last 2-3 minutes and watch for 30 seconds. It will give you a frame of reference for the madness below.

So imagine my surprise when,10 days later, I received a call from L, informing me that she had just finished Maya’s AT re-evaluation. (I had requested the evaluation months earlier as a formality, a part of the Turning 5 process, but was not notified ahead of time that the evaluation would occur that day—otherwise, I would have been there.)  When I requested the evaluation, I had assumed that the evaluator would make note of the fact that she was using a dynamic display device with a communication app functionally and independently and that should be protected on her IEP. I had assumed incorrectly.

L stated that based on her observations and reports from the staff, Maya was “unable to navigate her system independently”. She said that “the display was overwhelming” and that Maya “didn't have the motor skills to access the buttons or the keyboard”. She said "when I saw it, even I was overwhelmed by it." She told me that when Maya wanted to request a drink it took her “several minutes” to find the correct button.  (At which point I could not prevent myself from interrupting “Hold on. That is simply not true. There is no possible way that it took her several minutes to find the button for drinks. You are a lying liar who is falsifying evidence to make your case stronger, but I am smarter than you realize.” Ok, I may not have said that last sentence aloud, but I thought it.)

You may be wondering how anyone, even an overconfident biased gatekeeper, could spend time with the girl in the above video and come away thinking that her app is anything less than the perfect system for her . . . but, to be fair and honest, it’s not as simple as that. It is important to note here that Maya often chooses not to use her talker at school. I am reasonably sure that this is because the classroom staff models on many different devices (as opposed to home, where our modeling all occurs through her talker). As professionals know, aided language input is basically the most powerful tool that communication partners have----and since Maya is able to code switch with ease, she will gladly hop on to a TechSpeak, a communication board, a PECS book, or whatever the teacher is modeling with in front of the small group. She is also using word approximations with her speaking voice more and more.

However, Maya’s choice to use multi-modal communication is not in any way indicative that her current AAC device is ill-fitting or inappropriate, or that she is not able to access it independently. To the contrary, L was informed that I had “extensive video footage” of Maya using the device independently at home, but that they did not often see the same level of usage at school. (Interestingly, L acknowledged that she was told that such video existed but expressed no interest in actually seeing any of it. A weird decision,I think--- to intentionally choose not to view evidence of a child independently using her system before declaring “This child cannot independently use her system!”)

This conversation was heated, as you may imagine. When I was able to get a word in edgewise I pushed back, specifically asking "did the staff say that she is unable to use her device or that she often chooses not to in favor of using the other systems that are being used in the classroom" she relented that yes, they said she was able but refused. However, as our conversation progressed, she often returned to a language of disability. 

The gatekeepers might think that this is semantics, but it’s not. A child like Maya, stubborn and willfull but flexible and clever, may jump around to different systems. Or she may entirely reject her system from time to time—and she’s allowed to do that. Sometimes I don’t feel like talking either. And there are certain people who I’d prefer not to talk to at all, ever. But there is choice and there is ability . . . and if she has proved, repeatedly, that she is able to use a complicated, full AAC system that can grow well with her and carry her into adulthood . . . then to take that away is worse than a bad idea. It is a tragedy. It should be criminal. How dare L call me and tell me that she wants to take Maya’s system away and replace it with---

Oh yeah. I didn’t tell you what she wanted to replace it with.

L’s  recommendation was to switch to a New App. She wanted Maya on a 15 word display (despite the fact that she currently uses a 120-word display to independently produce novel spontaneous utterances). She thinks that because New App uses word prediction (shifting screens that prompt next word choices) Maya will have greater ease at participating during certain parts of the school day, like morning meeting. I was concerned that New App doesn't operate according to LAMP principles, and that Maya already has learned a large vocabulary using an app that works via motor planning. L said that since Maya was able to quickly make sentences on New App during the trial, this wasn't a concern. (Maya could make sentences on anything quickly, she’s a sponge like that.)  I was concerned that New App will allow for fast sentence production, but robotically (“Today is Tuesday, Today is sunny. I want the blue marker.”) but will take away her spontaneous, true communication (“Rainy. Tornado! Scary.” ---which might not be grammatically correct, but it’s creative and spontaneous and way more valuable to me than “I want the blue marker”). L told me that her only concern was ensuring that Maya was able to access the curriculum, and that pragmatics and social language were not her priority.

So basically, we should take away Maya’s only way to communicate her thoughts and replace it with a system that would that would decimate both her vocabulary and her ability to speak in a novel, creative manner. Also, the meager vocabulary that would remain would be reorganized in a system of folders . . . so a word that she could currently say with 2 taps could take 3 or 5 or 6 taps, and she would need to remember first tap this folder, then tap this other one, then scroll down and tap another folder and then there it is!  We should take away her language and give her something “simpler” because you don’t think she is smart enough to handle her system. Because you underestimate her, and your goals are consequently minimal.  Because she is stubborn and won’t comply with requests to use her talker, you want to take it away and give her a system so beneath her long-term (and really, short-term) capabilities that it is disgusting.

It’s akin to telling Picasso “Show me how you paint. Come on, show me!” and then when he fails to perform for you demonstrate his ability, you ignore his body of work, declare his paints too complicated, and leave him with a pat on the hand and a box of crayons instead.

(Yeah, that’s right, I just compared my kid to Picasso.)

If there are gatekeepers reading this, know that you are potentially dangerous. Make note of Maya. Make note of her, see how wrong one of your professional brethren was, and carry her with you as you move through your day’s multiple evaluations. L did not presume competence. L did not believe that Maya’s code-switching, multi-modal communication abilities, combined with her stubborn sass, could make her a child who is oh-so-able but also not-so-compliant. She assumed that my child wasn’t capable and she assumed that I was a mom who was overestimating her kid, who had bought an app without doing my research.

And she almost took Maya’s voice away.

Now I know that I’m just a lowly parent, likely misinformed or uninformed about this newfangled assistive technology wizardry. But before you cast this essay aside as the ramblings of a biased, over-estimating mother, allow me to introduce a piece of evidence that supports my case. As it turns out, L’s DOE evaluation was so late in coming that I had a private assistive tech evaluation done at a hospital in the city (rushing to have something on paper for our IEP meeting) two months earlier. This team met with Maya 3 separate times, realizing that she is slow to warm up and unlikely to perform on demand. When I told them, at the end of a frustrating first session, that I had video of Maya using the talker independently at home, they were eager to see it, to understand the full picture of Maya as a communicator. This team wrote a formal report that basically was an exact negation of L’s recommendations.  Here is one paragraph from that report:

During the initial evaluation and when getting to know Maya, it took Maya some time to feel comfortable using the device on command from therapist. Rather, Maya appeared to engage in conversation using the device when her mother and therapists were speaking. Once feeling comfortable with the therapists, Maya demonstrated ability to find icons in various folders demonstrating the potential for functional ability to communicate using this device. With practice at home and in the assistive technology occupational therapy clinic, Maya has demonstrated with ability to sequence selections. Additionally, Maya has demonstrated ability to search for icons by typing the beginning of the word on the on-screen keyboard.  It is evident that after searching for one item, she is able to locate the icon later on in the session suggesting sufficient carry-over when using the device.

I am an informed parent, and I speak SLP with surprising fluency. I understand and can debate best practices with regards to device selection and implementation. I am open-minded enough to carefully consider suggestions (I even called other AAC specialists to discuss the merit of possibly switching apps, just to make sure that I wasn’t overlooking something in my commitment to our current system) . . . but I am also confident enough to stand my ground.

I am not the typical parent who walks into an AAC evaluation. And that’s what scares me the most about these gatekeepers. Their recommendations are often unquestioned . . . or questioned gently. A timid “You don’t think he could handle more than a TechSpeak?” gets railroaded with “We can always re-evaluate him next year and maybe by then he’ll be ready for more. Right now we don’t want to overwhelm him with too many words---you know, he’s never seen anything like this before. He can practice at school during snack time for a few weeks, then they can make some activity-specific boards, and then he could even start using it at home! That’s a lot of things to work on!” 

(That’s not a year’s worth of stuff to work on.)

Fight hard, parents. This is your child’s ability to communicate that you’re fighting for. Children who learn to take conversational turns are able to become more assertive and independent as they are empowered to speak up, instead of sitting passively and waiting for someone else to (possibly) speak for them. Children who learn to combine words and phrases and form expressive sentences are actually mapping the language parts of their brains.  This is not just about answering simple questions or requesting a snack, this is about language development, cognitive development, independence and empowerment.

This should not be blindly left to a gatekeeper. A child’s communication system should be determined through careful collaboration of the parents, professionals who regularly work with the child, and the gatekeeper . . . not to mention the user, if he or she is old enough to reliably indicate a preference for a particular system.

Educate yourself. If your child has enthusiastic teachers or therapists, educate them about AAC as well. (Not to be biased, but this post isa decent compilation of resources to get started with.) Go into these evaluations with some loose ideas of what you think might work. Listen with an open mind, and if the gatekeeper has a different opinion ask questions like “In which ways do you think (their suggestion) would be more appropriate than (your preference)?” Do not be afraid to push back. Do not get railroaded, do not let them rush things. This is not just the gatekeeper’s first appointment of the day, this is your child’s voice.

Do not be afraid to have audaciously high expectations of your child.  Do not let a gatekeeper make you question your child’s ability or competence.

Finally, to the gatekeepers. I am sorry if you read this and became infuriated with my misrepresentation or lack of understanding as to your intentions and responsibilities. I am sorry if you feel like I painted an unfair picture of what must be a taxing job. But we had 2 evaluations with our gatekeeper, 16 months apart, and her underestimation of my child (both times) would have had the potential to destroy a great deal of progress and lower the expectations of Maya’s educators if not for the fact that I was informed enough to get mad and fight back. And so, quite honestly, I don’t mind offending hundreds of you if this blog post empowers even one family to presume competence, dream big, and fight back.

An important addendum (6/4/13): In hindsight I realize that this post could read as if I am anti-low tech (or no tech) AAC, which I am not. What I am against is the underestimation of kids with complex communication needs.

Dear Mom of a "Typical" Kid . . .

I wrote an essay for the website WhatToExpect.com and it went up today. In it I reflect on the trips that Maya and I took to the playground, back when she was little enough to be pre-preschool, but big enough to stand out as different from her same-age peers. I hadn't anticipated how uncomfortable I would feel when trying to mingle with other parents at the playground.

"In a way, she makes it easier for me. Because she-and-I-together, well, I know how that goes. It's-easy/it's-lonely/it's-playful/it-sometimes-stings, but it's a familiar sting. The pain of sitting with a group of typical moms and typical kids, listening to conversations ebb and flow... that pain is different, surprising, and I never know where the unintentional jabs will come from: a lament over a child's refusal to stop climbing on the furniture, a comparison of new favorite toddler snacks, or the sharing of the silly things that little kids say. There's nothing for me to contribute to those conversations, as I long for climbing and typical foods and toddler conversation. It's easier for me to keep my distance."

Read the full essay here, on What to Expect's "Word of Mom" blog.

Maya Finds Her Voice

 . . . in only 10 minutes.

This video is my attempt at a short-as-I-could-make-it partial-summary of our journey to find some sort of communication system for Maya.  It starts with a photo of Maya on her 2nd birthday and continues from there. It was kind of amazing to put together.







Answers to anticipated questions:

• The first app that you see is called Proloquo2Go, running on an iPad in the Otterbox Defender case.  
• The communication boards and picture cards for the Word Book were created using BoardMaker software. 
• The final app that you see, the one that we still currently use, is called Speak for Yourself and is running on an iPad in the AMDi iAdapter case (later footage includes the plastic keyguard that helps her not hit other buttons accidentally).

Our whole story doesn't fit in a 10 minute video, we also used sign language, labeled household objects with pictures, used a modified glove before we had a keyguard, and studied the work of many experts in the field of AAC (augmentative and alternative communication) as we went.

We are still a work in progress.

There is no finish line here. I make no claims at having done this perfectly, but we've done this all in the best way that we could figure out.

If you are a parent who is trying to figure out how to start the AAC process with your child, check out this link.

There's more information about our assistive tech journey here.

Maya & I sing

Some weeks are hard and filled with sadness.

If I had to write something now, it would be . . . well, it wouldn't be uplifting.

Instead, I'll let Maya sing. She loves calendars, the days of the week, schedules, the weather, etc.  I think she could likely run "morning meeting" if her teacher was absent. The other day I decided to pause during the  "days of the week" song (sung to the tune of the Addams Family theme song) and see if she filled in the gaps, and she did.

Here we are, waiting for the school bus, dancing around, and singing a little duet.

What my children think about AAC

Well, that's a misleading title, because I basically have no idea. Maya uses her talker, and her voice, and signs, and points, and doesn't much show what she thinks about her multi-modal communication efforts . . . not yet, anyway.  There have been times of yelling and intensity when she can't get her point across, but that's more about an inability to communicate than it is about her modes of communication.

And Will . . . well, he's a baby. I'm even less sure about what's happening in his head than I am about what happening in Maya's.

But in the past week, they've both given me little glimpses into their thoughts about Maya's AAC use, and her talker, and it's been very interesting.

Last night Maya and I were discussing dinner. The words in bold (with quotes) were things that were said aloud, the words in italics were with the talker. (bold + italics means I was talking and modeling on the talker)

Me: "Maya, for dinner you can eat rice and vegetables."
Maya: "No. I want" yogurt "please."

So she spoke "No, I want" then tapped yogurt and then spoke "please."  In a discussion on our Facebook page last night I was informed that this is called code switching.  It's really interesting, to me, because Maya was being pretty forceful at the time---she really wanted yogurt---and she stopped speaking to tap yogurt and then returned to speaking again.  It's important to note that she has no way of speaking the word "yogurt"---nothing clear, at least---but can clearly say "no I want please".  She knew I wouldn't understand her spoken yogurt and chose to use a different language (kind of) to tell me.  Pretty cool.

Now, onto Will.

I wonder about what Will will think of Maya's talker, since he's growing up with it from birth.  When will he understand that it's her voice, a way of speaking? When will he recognize that it is a part of her?

Last week Maya was playing with our pink iPad, which is not the talker but holds a back-up copy of her communication app.  (It also holds learning games, since the iPad that we use as the talker is solely for communicating and doesn't have any other apps.) A glitch had caused the voice on the pink iPad to reset to an adult male voice (clearly different from the young female voice that Maya uses). Maya started using the pink iPad to talk (with the man voice) to Dave and Will  . . . and Will thought it was hilarious.



This is particularly interesting because I experimented the next day, tapping things in the man's voice, and Will didn't laugh at all. He also doesn't laugh when Maya uses her talker.  It seemed to be the fact that she was talking to him using the man voice that cracked him up . . . perhaps similar to if I started talking to him in a silly, deep voice?

So, does that mean that (at 6 months old) he understands that the talker is her way of speaking? Does he recognize her typical talker voice?  It seems like possibly yes to both, although who could really say for sure.  It's interesting, nonetheless, and it will be interesting to hear both of their thoughts about AAC as they grow up immersed in it.

An Open Letter to the Parent of a Child with Speech Delays

Dear Parent of a Child with Speech Delays,

Good morning/afternoon/evening.  You may have clicked this link hopefully, seeing “speech delays” and wondering if I have some answer that will help your child.  You might be here through a googling session, during naptime or late at night or at work because it’s just eating away at you and the-time-to-act-is-now and what-more-can-I-do to help my child communicate.  You may have a kitchen drawer, or a shoebox, or a giant Ziploc bag full of tools: chewy tubes and bite blocks, z-vibes and jigglers, horns and whistles, and bubbles, oh my!

(If you don’t know what I’m talking about, and you are the parent of a child with a minor speech issue, like a lisp or a funny /r/ sound . . . then this letter isn’t for you.)

I am one of you, a tired parent of a child who was late (oh so very, very late, and she’s still taking her time, traveling the long, hilly, bumpy, exhausting road) to speech.  Like me, you may have 20/20 hindsight, realizing that the feeding struggles that appeared early on should have hinted at the oral-motor weakness and disorganization that lay ahead.  Or perhaps sounds and speech made appearances, only to fade away and leave you wondering if they ever really happened in the first place.  You may look back on the times that people complimented your baby for being “so well-behaved and quiet!” with a combination of wistfulness (because back then you didn’t know) and angst (because back then, should you have known?).  You may wonder if things would have been different if you had spent more time sitting face to face with your child and practicing sounds, should you have done more, do other parents do more, how-was-I-supposed-to-know-what-more-to-do.

The truth is simple: there’s nothing (in the realm of normal parenting) that you could have done.  And once you identified a speech delay and started with the exercises, the dramatic enunciations, the games . . . well, you were already going above and beyond what a “typical” parent has to do to help their “typical” child develop speech. 

Anyway, back to your speech delayed/apraxic/dyspraxic/nonverbal child.  Your child may have some speech, just less than he should. Or perhaps she has a handful of sounds, but nothing intelligible to anyone (except for you, her parent, of course).  Maybe your child is young enough and delayed enough that they don’t have much of anything (so well behaved and quiet, indeed).

Maybe they are on the road to speech.  Maybe they aren’t yet.  Maybe they just aren’t, end of sentence.

If, in your quest to help your child communicate, you haven’t yet tried something besides speech therapy (as in, therapy aimed at producing and refining oral speech), the time is now.

Please, let the time be now.

My daughter, Maya, is almost 5 years old. She can clearly speak approximately 15-20 words.  With her talker (an iPad with a communication app) she can speak approximately 700 words, with thousands more available at the touch of a button if she needs them.  With her voice, she can say "Mommy" and "Daddy". With her talker, she can tell me that today is Friday and she’s going to the therapy gym in the afternoon and she wants to ride on the big swing and the tire swing and do an art project.  With her voice she can say “bus.” With her talker, she can tell me who she sat next to at school and what they talked about and what she wants to have for dinner and whether she’s feeling tired or happy or cranky.  With her voice she tells me “no.” With her talker she tells me “No way, Jose.”

With her talker, she tells jokes and is sassy and is proud, so proud, to tell us things and to connect with us.  If she only had her speaking voice, I would barely know her.

Maya & her talker (photo by Keith Wagstaff, TIME.com)

As we have spent the past three months searching for an ideal kindergarten for Maya, we have seen many (many) schools and met with numerous doctors and therapists for evaluations.  We have heard, over and over again, “I’ve never seen a preschooler use a communication device the way that she does.”  I have seen (too many) K/1/2 classrooms populated by nonverbal kids where I am told that certain children "are learning to use communication boards" or "have just started learning how to use an iPad app to communicate" or "will soon be evaluated by the assistive technology team and will probably start using a communication device in the near future."

This is not because these children needed to wait until K/1/2 to be ready to use a communication device.  This is not because preschoolers aren’t capable.  This is because most preschoolers (and pre-preschoolers, frankly) don’t have the access to the augmentative and alternative communication (AAC) that they need. And, not to put too much pressure on you (since I know that you have so much on your plate, and raising a child with special needs is overwhelming, I know) . . . but you’re the one who needs to make this happen. 

It’s on you.

It’s on you, unfortunately, because this is a rapidly growing field, and the therapists/teachers that you work with might not be aware of all of the new stuff out there.  It’s on you because speech therapists carry giant caseloads and aren’t technically required to be highly educated about or suggest AAC .*, **  It’s on you because the special needs schools and teachers won’t meet your kid until kindergarten, and then will spend a few months getting to know him before requesting as assistive tech evaluation, and now your kid is 5/6/7 and frustrated and acting out (or worse, shutting down).**  It’s on you because the preschool teachers/therapists have never seen a little kid on a big, total communication device/app and wouldn’t even think to suggest anything outside of a communication board or PECs, because they aren’t even aware that that’s a legitimate possibility.**

It’s time to expose your child to AAC, to give them alternative ways of communicating. If you haven’t heard of AAC, it's awesome, and I’m going to walk you through a few options in just a minute.  If you have heard of AAC, but haven’t tried it yet, I’m going to take a paragraph to dispel a few of the concerns that might have caused your hesitation.

First, the use of AAC will not prevent/impede the development of speech. Here are a few links and research that disprove this fear, and an important study that showed babies who learned sign language simultaneously with speech developed speech at the same timeline as a control group and ended up with larger vocabularies.***   Second, your child doesn’t need certain skills, understandings, or cognitive abilities to start using AAC.  You don’t wait for a baby to become skilled or “smart enough” before you speak to them . . . there’s no need to wait any longer to start modeling AAC use with your child.  Third, you don’t need to wait to see if maybe speech is right around the corner---AAC is not a “last resort.” Speech will keep on progressing alongside of the progress made communicating with the AAC system.  Fourth, your child does not have to be older!  We started toying with different things around 18 months, and I wish that we had started earlier. We had to switch systems a few times before finding the perfect one, but the work that we did from 18 months-3 yrs laid the foundation for when we found her perfect system at 3.5 years.  Start simply, start small, just get started already.

Are you convinced yet?  Think for a moment of what it would be like to have to rely on speech for communication, knowing that you couldn’t get any sounds out that made sense.  Imagine that you were in an accident that rendered your voice useless and landed in the emergency room . . . people talking at you, asking you questions . . . what would you do?  Hopefully someone would bring you a piece of paper and a pen . . . you know, an alternative way of communicating, a way in which you could be immediately successful while waiting for your voice to heal.  Your child needs the same.

So where do you go from here?

1. Talk to your speech therapist about AAC. If they don’t know much about it, talk to other speech therapists, or teachers, or a developmental pediatrician.  If you can’t find answers call a special needs school in your area and talk to their speech therapist.  If there’s a local children’s hospital or therapy center, talk to them. If you can find a support group for parents of kids with special needs, speak to the person who runs the group.  Post on local message boards asking for the names of top speech people in the area. If there are advocacy groups for people with disabilities in your area, talk to them. Don't be afraid to reach out to groups that serve specific disability populations (groups for children with cerebral palsy, Down syndrome, autism, etc) even if your child isn't a part of that population-these groups generally want to help families, regardless of your diagnosis, and may be able to steer you towards good resources. Keep asking around to see if you can get referred to someone in your area that knows about AAC/assistive technology and can point you toward a local expert or resources.

2. If your child has an IEP/IFSP, speak to your caseworker or the official in charge of the document. (You might want to work with your child’s preschool/school on this, if they are already school age.)  You want an assistive technology/augmentative communication evaluation, and you want to request it, in writing, immediately.   (I’m not sure if different states have different processes for these things. This is a good topic to discuss with the people/groups that you found in point #1.)

3. If at any point in Step 1 or Step 2 a professional indicates that they don’t feel like your child is ready, that they aren’t familiar with multiple options (example: they say something like “Oh sure, we have several children using -insert app name-,I guess we could try that” instead of actually creating an individualized plan), or they seem otherwise resistant, then proceed onward to the next steps.  You’re going rogue.  You’ve got to take the lead on this yourself. You need to get educated so that you can do it correctly. You can do it. (I had to do it, too.)

4. It’s time to hit the internet and read about AAC.  Join (or peruse) a message board/online community for parents of kids with special needs, kids with speech issues, kids who have apraxia, etc. (yahoo groups or babycenter groups might be a good place to start).  Use google.  Look for some general posts/articles about AAC---good buzzwords would be: PECS, picture cards, Boardmaker, communication boards, communication books, PODD books, AAC devices, AAC, AAC apps, communication apps.  Read other people’s stories, learn about how children use different types of AAC.

5. In conjunction with #4, search YouTube. Look for videos of kids using different communication systems.  Use the same buzzwords that I listed above.  See that it’s possible, see the different skill levels.  If you think “my kid couldn’t do that” just remember that most people don’t upload the videos of all the times that it didn’t work.

5 and a half: It's time to remember that this is a marathon, not a sprint. You might be reeling from too much information. Take a night off.  Then get back at it.  Go slowly, but keep going.  Now that we have a system in place, there are entire months in which I am not purposefully researching, just modeling and working our system. Then I start reading again.

6. Realize that you’ll probably end up trying several things, and that’s ok.  Here is a list of things that we tried with Maya, along with links that will take you to blog posts (most of which have pictures and/or video) so that you can see we’ve tried many things, too:

• picture cards/PECS
• household labels (this wasn't really a system, just a supplement to the picture cards)
• Proloquo2Go (a communication app that I customized in a probably-incorrect way to use as a starter system.  In the end, she could use it but I didn't love the set up and it's growth potential.)
• Communication Boards I used Boardmaker, and it worked well. I still make occasional boards for specific circumstances.
• The Word Book A big, fat homemade binder for when single communication boards weren't enough any more. It worked well. 
• Tech/Speak She used it at school. A perfectly good tool, but I felt limited by the vocabulary size. Not a great fit for us, but a great fit for many.
• Speak for Yourself This is the AAC app that we use now. If you check out my YouTube page (dmgnieder) you can see a bunch of videos of Maya using her talker. This post has a few in progression over our first four months.

edited to add that we also did a 6 week trial with a Dynavox Maestro communication device. Clearly (as I forgot about it) it wasn't the best fit for us, but it great for many others.
 
7. Realize that AAC is really, really individualized. It is not a one-size-fits-all operation.  It’s possible that you saw something in #6 that seems like it could work for your child, or that what you saw gave you an idea that would need some tweaking, or that you saw nothing helpful at all.  That’s ok.  Some children start AAC with a high tech device/app, some start with a simpler choice-based app, some start with a communication board, some start with tangible cartoon picture cards . . . some start with laminated photographs of actual objects . . . some start with using the actual physical objects themselves (and if your child can't use their hands to point to cards/pictures/device, don't worry, then there's eye gaze technology).  Any starting point is infinitely better than not starting at all. (Prior to picking a system I recommend that you read some of the research and opinions of the people that I mention in #9--they may guide you toward some of the more sound, research-tested options. If you're going with an iPad app, Jane Farrall's list is a good place to start.)

8. Once you find something that seems like it might be worth trying with your child, it’s time to learn about best practices and how to start using it.  Picking out an AAC system seems like the trickiest thing ever, until you have it in your hands and realize that now the tricky part (so-what-the-heck-do-I-do-with-this-thing-now) starts now.  For me, the most important lessons (and reminders) have been about modeling and waiting and using core words as soon as you can.  This was my take on modeling & waiting.

9. Find out who the experts are and read their stuff. Research papers, websites, sites that mention them, etc.  Go hear them speak if you can. They will teach you about best practices---how to use your child's system with them, get them to embrace it, and teach them how to communicate. Here are some people who know their stuff, inside and out: Linda Burkhart, Cathy Binger, Karen Erickson, Jane Farrall, Carol Goossens', Gretchen Hanser, Katya Hill, Jennifer Kent-Walsh, Janice Light, Caroline Musselwhite, Gayle Porter, Gail van Tatenhove ****

10. Find some good AAC blogs/resources, follow them on Facebook/twitter/Pinterest, and don’t be afraid to reach out.  On Facebook I particularly recommend PrAACtical AAC and Lauren Enders---both are very active and share tons of articles and links.  I also like the core word suggestions from the Center for AAC & Autism, and I follow several apps--including the aforementioned Proloquo2Go and Speak for Yourself.  If you want to find people to follow on Twitter start following the hashtags #AAC #augcomm #SLPeeps #ATpeeps. Some of my favorite twitter users (tweeters?) are: @CommGreenhouse @USSAAC @parkerrobin @ISAAC_AAC @janefarrall @SpeechTechie @speak4AAC @sayit_any_way   (Oh, and our FB page is Uncommon Sense Blog and my twitter handle is @UncommonBlogger) ****

11. A few other possible helpful sites:  YAACK, Speaking of Speech, AAC at Penn State, AAC Intervention, AAC Kids@PSU ****

12. For extra motivation from a parent who went against the advice of various professionals and fought to get his daughter an AAC system, read Schuyler's Monster: A Father's Journey with His Wordless Daughter  Besides being interesting and motivational, it's also just a good book (and I'm picky about books, so when I say "good" it means entertaining, witty, and solid from start-to-finish).

13. *This step is important* Remember that I am just a parent. I am not a professional. I am the mom of an adorable nonverbal girl who went out into the great wide internet in search of a solution that could help my kid communicate.  (although while I am "the mom" I'm not "just the mom") This blog post is the closest I can come to a master list: the reasons to try AAC as soon as possible and all of the steps/tips/tricks that I can think of giving someone who is newly on the road to AAC.  Undoubtedly, I am leaving things out (and I’m hopeful that some wise professionals and parents will fill in the gaps by leaving helpful tips and resources in the comments section of this post--please!).

Good luck.  This needs to happen.  You have to try.  The internet is wide and there are resources out there.  And the first time that your kid "says" something through AAC that they aren't able to say with their speaking voice, all of this work will be totally worth it.

From,
A mom who wishes that she knew earlier

* Per ASHA, in their position paper on the roles/responsibilities of SLPs with regard to AAC

**If you are a speech therapist, preschool teacher, preschool therapist, kindergarten teacher, or elementary school therapist who read this paragraph and thought “Hey lady, wtf? I’ve been suggesting that stuff for years!”  . . . well, thank you.  Thanks for pushing our nonverbal kids who are capable of so much more with regards to AAC and assistive tech than most people give them credit for.  This paragraph is about the others---who are, unfortunately, the majority that I've encountered.

***Holmes, K. M., & Holmes, D. W. (1980). Signed and spoken language development in a hearing child of hearing parents. Sign Language Studies, 28, 239-254 and Daniels (1994), in “The Effect of Sign on Hearing Children’s Language”

****Undoubtedly I have forgotten some amazing people/websites here.  Please, knowledgeable folks, remind me (and everyone) who else we should be reading/following in the comments below.